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Sep 20, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Nick
If you read about MAC most articles talk about either nodular or cavitary. Cavitary is treated more aggressively. The type is determined by CT scan. Your doctor can tell you.

Thanks
Kay

Sep 20, 2017 · conversation with Dr. Joseph Falkinham of Virginia Tech University in MAC & Bronchiectasis

Terry
Thanks so much for the time and guts to make this call. Good info from him, maybe he can be an ongoing resource for us? It’s sounds like you established a connection.

Nice to have a professional into NTMs.

With gratitude to you and the Doc
Kay S

Sep 20, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Nick
I tnihk the decision to treat MAC is based on a 3 pronged approach.sputum, how you feel and CT scan. A cavity showed on my scan and I was positive, not many symptoms. But cavities are treated aggressively. So is widely spread nodules maybe. So, the CT is a piece of the decision. Maybe your was clear.
Kay

Sep 15, 2017 · Possible causes of MAC/MAI Re-Infections in MAC & Bronchiectasis

Renee
MAC is a diesease that’s different for everyone. Cavitary and nodular differ along with type and location. Side effects to the big 3 differ as well. I didn’t feel great but after a full year I was taken off too. We all are impacted physically and emotionally from the disease and the drugs.
I’m not a doc, but I think Sputum cultures, CT scans and patient symptoms is what the docs use to determine if you have it or It comes back.
I’ve been off meds for 6 weeks, there are after effects like some gut issues I have . There is also the emotional stuff, the anxiety most of us have not knowing what’s next.

Here’s what I’m trying to do. Just live. Be happy to be off meds and feel pretty good. Trying to get out and do things, eat healthy, exercise and spend quality time with friends and family, donsome service work. We only really have today, I’m 71 and my friends are getting sick, some have died. So, maybe we just need to try to feel the joy of having survived till now and just try to live each day fully, maybe try to do some good with our remaining time. I worry terribly, but I keep pushing through to change my thinking and just live. Sometimes it’s easier than others, I’m writing this today but could be the person tomorrow afraid and looking to the forum to pick me up.
Wishing you and all Forum friends a nice Autumn weekend.
Kay S

Sep 11, 2017 · Possible causes of MAC/MAI Re-Infections in MAC & Bronchiectasis

Pamela
I really appreciate your detailed reply.

Is our MAC gone? Some would say it’s never gone, but my Mayo doctor has patients who are years away from getting it back. I may be too optimistic but I think it depends on several factors like the health of a person’s immune system, what kind of MAC you had and where it was in your lung you had it ( some of that’s arm chair doctor stuff).

I am only 6 weeks off my meds, and am finally pretty much over my screwy stomach- my gut bacteria is on the mend.

I’m saying the MACs gone, not welcome back. Hoping for the best for all of us on this journey together.

Kay S

Sep 10, 2017 · Possible causes of MAC/MAI Re-Infections in MAC & Bronchiectasis

Pamela
How was Pseudonomas found? How do they think you got that? I took big 3 also and off 6 weeks. Hoping for the best for all of us with active and “non active” MAC. I call it “cured”! My Mayo doc says some patients never get it back.

Kay S

Sep 4, 2017 · Aerobika/nebulizer cleaning question in MAC & Bronchiectasis

Jen
I hardly use the Aerobika and my doc said that doing lung clearance for me doesn’t do anything as I cough up zero most days. I have bad Post Nasal Drip and that runs down my throats and makes me throat clear, but it’s not from my lungs. Yellow stuff seems to be from my nose that gets in my throat. My nose runs all the time, I use the Mayo drops and get some relief.

Sometimes I feel like I must have reflux as I have the symptoms of silent but Mayo gave me the 24 hour study and said no. So I go with that.

I’m feeling gone d and thanks for the stomach wishes. I’m better but I’m sure my guts a bit screwy too. I was having yeast infections and they are gone now. Took a full month. It’s nice to be on an antibiotic vacation right? Hope it’s a permanent one 🙂

Send questions to 128128Terry and me. We are compiling them and will attempt to get 2 microbiologists who work w MAC to answer some of the crazy questions. Send me questions on email if you would. Thanks
Later, Kay

Sep 3, 2017 · Aerobika/nebulizer cleaning question in MAC & Bronchiectasis

Luvocean I’ve read that boiling water for 10 minutes is the only for sure way to get rid of NTMs. I boil a big pot each day and each evening pour it into a large container. You can refrigerate or not. I think distilled and spring can still have NTMs but not as many.
I think water you drink becomes more important if you have GERD.
I think we should put drinking water on our question list.
Kay S